I'll be writing to NBC and to the doctor. I wonder if the patients that she interviewed had ever been told about optimal dialysis. My guess is no.I'll be the first one to declare that I want a transplant, that I want to avoid dialysis and that I am actively pursuing both of those goals. But if despite everything I have to go on dialysis, I will NOT be a victim of the system. These reports are indeed a missed opportunity. But you know, news outlets are always searching for content in this 24 hour news-cycle world, and I am guessing that NBC might welcome a chance to spread the word about a "new" dialysis modality and the work that more and more people are doing to bring optimal dialysis to everyone. NBC might have missed an opportunity, but we don't have to.
Moose Mom.... you need to wait until you are ON dialysis before you go writing letters.
If you're going to push donation/transplantation in order to reduce overall federal spending on dialysis services, then we're going to have to take donation off the pedestal and get rid of the preciousness around it. I don't know why people who chose to donate their organs after they die have to be lauded as heroes, as if donating when you are dead requires some great sacrifice on your part. Once we change the mindset to accepting cadaveric donation as commonplace, then more people will of course sign a donor card or of course agree to have an opt-out policy and of course would just assume that their families would agree.
Quote from: Rerun on January 01, 2011, 10:08:39 AMMoose Mom.... you need to wait until you are ON dialysis before you go writing letters.And why is that? I'll write letters whenever I want, thanks very much. I watched my mother slowly die over 5 years of dialysis. She didn't get any choices. She was funneled into a system that didn't provide her with the best care. I choose to write on her behalf.I've always suspected that there is this public perception that esrd/dialysis affects more minorities, and since white people make the rules, the non-white people are left behind. Sorry if that seems stupid, but tell me I'm wrong. All of the celebraties we've heard about in the past few years that have gone public with esrd/transplantation have been of color...Alonzo Mourning, George Lopez, Tracy Morgan. I do believe that there is an element of institutional racism when it comes to discussing funding for dialysis.If you're going to push donation/transplantation in order to reduce overall federal spending on dialysis services, then we're going to have to take donation off the pedestal and get rid of the preciousness around it. I don't know why people who chose to donate their organs after they die have to be lauded as heroes, as if donating when you are dead requires some great sacrifice on your part. Once we change the mindset to accepting cadaveric donation as commonplace, then more people will of course sign a donor card or of course agree to have an opt-out policy and of course would just assume that their families would agree.It can't come as any surprise that our society wants to spend as little money as possible on health care costs. The bottom line is that transplantation in the US IS cheaper and for most patients, it IS the best treatment. Having the best treatment also be the cheaper treatment is attractive, so I can't claim that it is a bad thing to have this particular treatment touted as most beneficial and cost-effective because it IS.Henry, I am really, really glad that dialysis helps you to thrive and to enjoy your life to its fullest. But I do have to wonder if you are in the majority or in the minority. Maybe the propaganda has worked on me, but I find it very hard to believe that most dialysis patients in the US are like you. I suspect Rerun's experience is more the norm...doing OK but wanting so much more.
Hemodoc, someone is benefitting from keeping patients in the dark about the benefits of good dialysis and the risks of transplantation. What do you see as the single biggest obstacle to getting optimal dialysis for all? Is it simply a matter of funding? How many patients who are now on thrice weekly inclinic hemodialysis do you think would be good candidates for nocturnal or NxStage? I know that's a difficult question, but do you have any idea of the percentage of people who could be doing hemo at home but have not been offered that choice?Ultimately, we have to be responsible for educating ourselves, but I don't know how people who have no internet access or little education or few resources can get the information that you and I can get. People have their lives to lead and might have kids to take care of and jobs to attend to. They SHOULD be able to rely on their medical teams to give them all information on how to achieve optimal dialysis and what happens with transplantation, but that's relying on luck. Cariad, cadaveric donation should be lauded just as you say; I guess what I'm trying to explain is that it would be good if more people more often would see donation of their loved one's organs as a way to express how much they value the person's life and how much comfort this decision could give them. It shouldn't be such a difficult decision...it should be an easy one, and maybe in time, the collective thinking on this will be more along these lines. I hesitate to say, "It would give ME comfort, so it should give OTHERS comfort, too!", but, well, I guess that's exactly what I am saying. If my son died and I thought his organs could save the lives of several people, that would give me a HUGE amount of comfort. I wouldn't be haunted by feelings that his death was completely pointless and wasteful and his life ended up having not much meaning.
There is a fairly new woman at my dialysis who is upper middle class and she gets the 25 year old homeless drunk to sit by (when he comes). I just have to laugh at the looks she gives me to reflect her discontent. I guess you have to find humor when you can.
This would be an appropriate thread for comments to address numerous topics recently raised. Again, please excuse the long essay. I don't know any other way to give context to important issues. And, if I'm repeating what has already been brought up before, sorry, I can't read everything on here!First of all, I agree that for the most part, there is negative national media bias towards dialysis as a treatment for esrd. This has been going on for years, mainly fueled by the NKF and organ transplant organizations to increase public awareness of the need for organ donation, and the NKF to promote its main goal, the eradication and treatment of kidney disease through research. [Even today, the NKF doesn't acknowledge dialysis treatment or dialysis patient success stories on it's home page. - www.kidney.org. Maybe sometime soon I will start an essay on the pros and cons of this decision by the NKF.]When the awareness campaigns went into effect back in the mid 1970's the public's view of organ donation, especially cadaver donation (only family members were even considered for live donation for medical and ethical reasons) was extremely negative. People did not understand the concept and therefore were extremely skeptical. Most religions were not in support of it and individuals were worried that if in an accident, they would be allowed to die so their organs could be taken. It was going to take a massive education campaign to change these perceptions as well as persuade religious institutions that organ donation could fit within their belief systems.Also, on a more subconscious level, the NKF had to overcome another problem most other major volunteer health agencies at the time did not have to worry about, the perception of the kidney itself. Here's a little word association exercise to illustrate. What comes to mind when someone says: heart? - love, valentine's day, life; lung? - breathing; kidney? - peeing, bladder. See my point? While the American Cancer Association had the same problem as the NKF (cancer = death), the disease was so pervasive that just about every family had a member affected by some form of it. So it was only natural for the NKF, as all other health agencies do promoting their causes, to appeal to people's emotional heartstrings. And, for the NKF the message became - help support us so these poor afflicted people can get off this horrible form of treatment by signing an organ donor card and give us money for research to eradicate the disease for future generations. Whether we - as patients/family members having to live with KD or any other illness agree or not, it is a proven strategy. OK, now to focus back on just KD. Media love visuals. Research has shown readers of newspapers usually skip over articles that have no photos. TV news watchers not only love visuals, but love visuals with negative drama. What do you usually see in the first few minutes of the news? Fires, murder, bank robberies, etc. Feel good stories are relegated to the end and/or just a 30 second spot. Controversy = high ratings, more ad revenues. Feel good = low ratings, less ad revenues. Even Oprah, the queen of feel good, has never had a successful dialysis patient featured on her show. Transplant recipients, yes. It's human nature, folks. We are just more attuned because we are the ones affected.So, why weren't dialysis patients more proactive? Well, we tried. The first national organization dedicated to our well-being and interests was formed in 1969, NAPH, National Association of Patients on Hemodialysis, later becoming NAPHT (the T for transplantation) and finally changing its moniker to only a half mouth full - American Association of Kidney patients, AAKP. Their main goal was to educate politicians to the life saving treatment called dialysis and lobby Congress for universal coverage of treatment through the medicare program. This was actually one goal where the NKF and AAKP were in one accord, but to my thinking, with different agendas in mind.Again, you need to understand why medicare funding became a successful effort. In the mid-1960's to early 1970s, there were community panels who rationed this scarce medical resource called hemodialysis. For the most part, the only people given serious consideration were those considered to be "contributors to society;" hard working, upper middle class white males between the ages of 25-45 with families, psychologically stable and with no other major debilitating illnesses. Most did treatment in the evening hours at home - not because it was "optimal" (more on this topic later), but because there were only a few regional dialysis centers in the country - and continued to work during the day. For most, it was an enormous strain on the family. But, they did what they needed to do to survive.This is an extremely important concept to understand. Congress was persuaded in 1972 to fund the esrd program based on only the statistics of those cherry-picked to receive treatment. It was estimated that the program would cost $250 million over 10 years. Today, more than $14 billion is spent on the Medicare ESRD Program. The increase in costs came primarily from the larger than anticipated numbers of ESRD beneficiaries. But it wasn't unanticipated by the physicians or providers! They knew how many would benefit from universal access to treatment. And, in my mind, that's more of the reason the NKF got behind the effort - to garner the medical community's support, not patient welfare. Remember, their stated main goal is the eradication of kidney disease - not dialysis treatment.AAKP's organizational leadership during the 70s and 80s was comprised of some of the best minds from the patient perspective, most notably, Peter Lundin. Dr. Lundin, the first patient to go through medical school, residency, and internship while on dialysis, was an inspiration. He dedicated his life to patient care as both a nephrologist and advocate. It was an extremely fine line he had to walk and no one to this day has been able to come close to what he accomplished. Other patients, just to name a few, who were instrumental in the early days of the organization included, John Newmann, Shep Glazer, Gerry Desner, Carol Robbin Myers, Paul Feinsmith, George Harper, Sam Orenstein, Jo Berman, Margaret Deiner (AAKP's first paid executive director) and Barry Friedman, who's spouse, nephrologist Eli Friedman, was a great supporter of AAKP.Although it was national in concept, NAPHT/AAKP continued to play to its base for membership - middle class/upper middle class whites, even though esrd demographics were quickly changing with universal access to treatment. It also remained provincial with leadership mainly coming from its roots in NYC and "satellite" constituencies that had moved to Florida. While the volunteer leadership and subsequently paid staff were knowledgeable about kidney disease, there were two glaring voids - weak development programs (fund-raising) and no concept on how to work with the media. Plus, leadership always wanted to try to resolve important patient issues - quality of care, reuse, informed concept - within the renal community "family." They did not particularly care to publicly air dirty laundry, especially since by the 1980s, medicare reimbursement rates were starting to take hits. Also, AAKP always relied too heavily on the renal industrial complex, nephrologists and ancillary staff members for funding ( a major conflict of interest when trying to get the same people to become more responsive to patient concerns!) and the membership, itself. Only half-hearted attempts were made to get financial support or for that matter, support for the important issues to us, from the public. When I stopped being active in AAKP in the early 90s, there were over 100,000 people on dialysis. Yet, the organization's patient/family member paid memsbrship was around 7,000. Today, AAKP it is still the most widely known patient organization, but I believe it has never reached its goal of being the true, effective voice of kidney patients. So why haven't we still gotten our message out to the public? Key factors include:1) We are a splintered voice. There needs to be one organization that truly speaks for us that can have an impact. 2) No high profile celebrities, athletes, etc. on dialysis are willing to be front people for patient advocacy. They all want transplants and end up promoting organ donation, usually through the auspices of the NKF.3) Demographics. While comprising only 25% of the population in the U.S., more than 50% of those with esrd are African Americans and Hispanics. For numerous reasons, the majority of folks in these groups are either unwilling or unable to speak out. Also, the fastest rising group of patients are the elderly with multiple medical issues. Again, a population that doesn't have the ability to be out there advocating for "optimal" care. Finding one voice with clout to speak on our behalf is going to be extremely important in the future if Obamacare is allowed to roll out in all its glory. We will be "screaming" with every other self interest to get a piece of the limited medical benefits pie. Since the structure is already in place, the AAKP is the most logical choice. Yet, I'm extremely pessimistic that its current leadership has the capabilities or even willing to allow those who do, to take on the roles through its auspices. There's more, but I feel that this is both overload and probably not welcomed by most on this site. However, this is based on 33 years as a patient, former NKF employee and AAKP/ESRD Network patient advocate. I will end by wishing all of you a happy new year in 2011! ~ Noahvale
Henry, I really do understand the psychological impact of losing your "self" to esrd. When you lose your job or your vocation because of illness, the result can be devastating on so so many levels. You were almost a victim of "the system" in that "the system" assumed that being on dialysis naturally disables you. You've proven that good dialysis can save your life and your health AND your heart and soul. I just want everyone to receive dialysis in such a way that they don't have to be robbed of what they feel defines them. Again, the "with no imput from me" circumstance is what is so crippling. With esrd, the last thing you want is to be more out of control over your own destiny. Like you, Henry, I have no intention of letting other people disable me, and I heartily applaud the fact that you didn't let anyone disable you, either.Rerun, I do know what you're saying. Re racism, what I was trying to say was that I have to wonder if minority populations are given the best information so that they can make informed choices. I've taken my mom to dialysis clinics all over the country (we have family all over the US, and she likes to visit them), and I know that you can't choose your clinic-mates. But I have to say that the vast majority of the patients that I saw were non-white, and it made me wonder if this population was getting good enough preventive, pre-dialysis care. The truth is that diabetes and hypertension, the two biggest kidney killers, are more prevalent in African American and Hispanic communities, so with these populations more at risk of being under or non-insured, they are at higher risk of ending up on dialysis. In-clinic dialysis seems to be a great equalizer, but the path to esrd seems to be shorter and rockier for non-white people or for people of a lower socioeconomic status. I haven't seen any hard evidence in this regard, so if someone has some numbers to show me, I'd be interested. I might just be talking out of my butt. I'd love to see some figures showing who exactly is being encouraged to do dialysis at home.Perhaps the answer to that particular query lies here:The primary ongoing issue it that the dialysis population will grow older and sicker on average over time but that average hides the fact that a significant number of young(ish) people need to use dialysis and they are locked into a system that is designed to serve people who are much older and sicker. Taking Bill's statement further, perhaps the older and sicker dialyzors are not considered candidates for home dialysis, and the younger, fitter ones get forgotten. Hemodoc, we may be losing the battle everywhere, but maybe I can win a battle or two. I don't know if I can fight Congress, but in my quest for optimal dialysis for myself, maybe I can drag some other people along with me, like my neph. If patients don't even know what optimal dialysis is, then how can they fight for it? I'm going to subtly ask my neph what his clinic does to educate patients, etc and how well home dialyzors are supported. Don't know if I'll get an honest answer, but since I'm armed with good information, a clear goal and a healthy amount of rage, I'll find the truth. I guess I'll just have to start with my own neph, my own clinic and my own treatment.
I Hate Dialysis Message Board
I Hate Dialysis Message Board
Author
